This Is MS Multiple Sclerosis Community: Knowledge & Support

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So glad to have found this site again. I signed on months back but ran out of time to read and participate.

My name is Alice, from the US, dx'd with RR MS in 2002.

In my mid 40's, I had to stop working almost 10 years ago when MS got the best of me. Now that I am so much better, I hope to return to work, even at least part time, somewhere in the future once I get this latest "thing" worked out. Respiratory complications...mercy!! It's always something, huh?

I was taking Copaxone, but am starting to get the weird side effects.
NOT!!!

I have been reading this site for a short while now and have just decided to introduce myself to the group. In 1986 about a year after graduating college and starting to work I began to have bizarre symptoms which were quite mild but very worrisome nonetheless. I first noticed a numbness of my right leg which persisted for a couple months or so and then it cleared up. After a short while I realized that that same leg now felt " heavy " as if there were a brick attached so that each step required a little extra effort. After a while that too went away. Over the next year or so these on again off again symptoms of numbness and very mild weakness moved around from one limb to another and I eventually began to have fasciculations or twitches in the facial muscles, arms and legs as well. All during the course of this year I thought I was losing my mind, but eventually it clicked with me that these seemed like symptoms of MS.
I went to my primary care MD in August of '87 and told him my story. I was referred to a neurologist and I described my symptoms to him and told him up front that I suspected MS. He did an EMG which showed slow nerve conduction in both legs. Next he did an LP but no other work-up. He called me following the LP to give me the results - something about some protein something or another. He said that while my findings could be consistent with MS he didn't want to confirm it at the time. He further stated that I should not come back to him unless my sypmtoms became worse. He stated that there was no real treatment for MS and therefore he wanted me go on living my life and to try to just forget about it. He tried to encourage me by saying that many people live with MS and never even know it and that many others live with MS with very little to no disability.

So I had no absolute confirmation of the diagnosis, just that my findings would be consistent with a diagnosis of MS. So I tried to follow his advice as best I could. Over the next year or so my very mild sypmtoms became less frequent and then seemed to stop all together. In '92 I suffered a right calcaneuos/heel fracture requiring surgery with pins and plates to repair it. I was told that this injury often left people with some residual pain and weakness in the affected leg. I went on to function well with little problem for about 10 years until '02 when I began to have much more weakness and pain in the right leg which I attributed to the surgery. Things worsened until I began to see some obvious atrophy of the calf muscle and began to suffer some lower back strain/pain with walking. At this point I returned to the orthopedic surgeon who was perplexed by the marked atrophy and sent me to the pain clinic for the back pain. After about 4 months of no work I eventually had a nerve block procedure which seemed to help. I returned to work in a new job which required far less walking in the spring of '03. I have done reasonably well until recently with only two temporary episodes of numbness in the hands during the past couple years. Over the past few months I have begun to sense that the muscles in my left leg are getting weaker and I find myself relying on compensatory mechanisms such as locking my knee and hip when standing for a prolonged period. I am walking well with a bit of a limp and a great deal of pain in both ankles , as well as some mild weakness in both arms just in the last couple weeks.

I have had no follow-up with the neurologist and no treatment of any kind in these 18 or so years. While I am blessed to be doing as well as I am, I now fear that I may have transitioned to SPMS. Would that mean severe disability is inevitable? I have scheduled another appointment with the original nuero guy but am informed that he is not in my network so I'm not sure if I'll be able to afford to keep that appointment. I'm trying to remain calm and level-headed but so many fears rear their ugly heads- of not being able to work, losing my home, losing my significant other, and ending up bedridden in a nursing home. Well that's about it. I guess I just wanted to share my story and have someone provide a word or two of wisdom. Thanks for taking the time to read my lenghty post.
Tracy

My name is Sylvia, but for this forum I am known as 4wheelgirl. It's a play on words as in FOR REAL GIRL? Anyway, I live in NYC and I have 2 wonderful children and a one of a kind husband. One beagle puppy, 2 african grey parrots and a boatload of koi and goldfish. Hehe, that makes up my whole family.

I was dx'd with rrms back in 2003 and started Avonex shortly thereafter. I have had several relapses within the past 2 years, my last being in March 2005. My neuro has since dx'd me with SPMS. I am not the least surprised that my status has gone to the next level. only because although I was dx'd just 2 yrs ago, I have had symptoms for many years and only now can I say, "oh that's what that was". Now in retrospect, everything makes sense, well of course, hindsight is 20/20.

Anyway, thats the short version of ME!!! Hope to meet you all through the forum.

Hi, I'm Karen. I'm 38. Live in the San Francisco/Bay Area. My diagnosis in January this year is "Clinically Isolated Syndrome." Last year, I had numbness periodically in one foot and some fingers, particularly when I exercised. A virus or bacterial infection over Christmas '04 left me with a mild case of Optic Neuritis. Had a spinal tap--2 out of 3 markers are positive for MS. But no real diagnosis. Just a new hobby. (':?') Married. No kids. Two cats. Scuba diver. Screenwriter. Work in advertising. Love hiking. Will fight MS to my last breath. And will do everything I can to be supportive and informative of you folks, in the process. We'll solve this, together.

Hi Mimi here frm Singapore. I'm 32 this yr, married with no kids and I was diagnose with MS early last year. I'm rite now trying to get a gripe on life after learning that I've MS. MS is not common among Asian in fact I've not heard of MS ever!... and support group for MS is rare here in S'pore, that's why I'm glad I found this place to learn more info abt MS . I'm on Rebif since Dec last yr and it's too early to tell if it is really working however so far so good. It has been a roller-coster experience for me & my husband during this period...me trying to adjust and accept and him trying to be there for me. 'Be strong and move on' ...that's the daily comfort words frm my husband ...that's what I trying to do right now.

My name is Grace and I was diagnosed in July 2000 - and I was worried about Y2K! Silly me. It was the first day of my summer holiday, I'd just gone to sleep and woke up with one side of my face numb. I thought I'd had a stroke, but I was so tired after flying for nearly 24 hours I decided to go back to sleep anyway and deal with it later. Good thing it wasn't a stroke or I'd have some serious permanent brain damage now.

Well the symptoms continued to pile up and I did go to the hospital the next day but it was another 2 days before they finally gave me an MRI and the diagnosis. The steroids were great -- like a miracle at the time. Of course, I had more energy than anyone could handle and drove my friends crazy -- finally settling into a routine of cooking and cleaning for several hours each morning before the IV treatment.

One day, when I needed to travel to a city a few hours away, my friend drove while I received my steroids (with the nurses's approval) in the car from an IV bag hung from the hook where people usually hang their dry cleaning. It was hilarious! People stared and gave me dirty looks, as if I was taking illegal drugs or something! Or maybe they thought I had cancer and I should go and die in private or something. Nothing doing folks!

As soon as I got back to Dubai, the diagnosis was confirmed and I started the Rebif in October 2000. In the beginning the MS was really progressing and in the few months between July and October the number of lesions had increased quite a bit. But as soon as I started the Rebif the headaches went away and even though I relapsed a year later, the new MRI showed remarkable inprovement -- most lesions had already healed. Since then I've had a relapse every two years -- always in summer. So far the effects are limited to numbness -- in the face, or hand or leg -- funny it's always a one sided occurance -- one side of the face, one hand, one leg. Last time it was my clutch leg that went numb but that didn't stop me from driving my manual car anway! Probably just an act of defiance on my part.

I self inject the Rebif 3 times a week and side effects are a thing of the past. No more bruises, no pain, no flu like symptoms, no problem. The only other medicine I take is Modafinil, for the fatigue. Aside from that I take a few vitamins but not as regularly as I should: Vitamin D (I don't like to tan and Vitamin D in large doses supresses the immune system), calcium (allergic to dairy and most MS'ers don't get enough), cod liver oil (anti inflammatory), Vitamin E (anti-oxidant, anti-inflammatory) B vitamins (too many reasons to count) and loads of other stuff. Also I avoid eating too much red meat. When I was first diagnosed I had just lost 49 pounds on the Atkins diet -- lots of red meat. Just prior to my last relapse I had been on the Atkins diet again for a few months. I still use the Atkins plan, but upon my doctors advice, with much less red meat. I really miss the beef Tenderloin -- used to eat it every day..... medium rare........ mooing...........

I've got some questions about Antegren. I feel like Rip Van Winkle here; I was waiting for this drug to be approved a few years ago but I've been working a job for the past year and a half, so I've been out of touch with MS news. Yesterday, when I found this site I couldn't believe it. Antegren was approved; I got really excited until I saw that it was withdrawn.

Today, I've been reading more and more about Antegren and I am confused about something -- When I first heard about Antegren it was supposed to be a treatment administered by IV no more than a few times and then you're done -- BBB re-established, go home, get well. When did it become a monthly treatment? Could this be part of the reason for the deaths that have caused Antegren's withdrawal from the market?

From what I've seen today, Antegren is not being marketed as it was originally proposed. Why has the duration of the treatment been extended? I don't want to think that it was extended purely to make more money, but you never know. Perhaps I'll get my hands on some Antegren and take it as it was originally proposed, save a little money and save myself from dying of side effects.

I've got so many questions, but I'll take my time to find the answers. That's how I found out about Rebif and Modafinil. If anyone has some answers, please share them with me. And if anyone has questions about the long term use of Rebif, I'd be happy to share my experiences with them. There aren't that many Americans that have been on Rebif for this long -- lots of Canadians, very few Americans.

Sorry to have been so long winded here, but I haven't conversed on these topics in a few years and I've got a lot to say. I don't know anyone with MS and only a few of my closest friends know I have it.

My name is Paul and at 52 I have been living with MS for about 8 years. My mother was totally disabled from her encounter with the disease, and last year my younger brother was diagnosed. It makes for some interesting discussions with my 24 year old daughter.

I am just beginning to experience noticable loss of flexibility along with the persistent tingles and such that my neuroquack tells me are part of the package.

But to quote a line from Doug Adams "Don't Panic". I have a marvelous wife of 32 years and so far have been able to maintain a reasonably good quality of life.

I really enjoy this site for it's information and the community. Thanks to all for the opportunity.

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